Bleeding Disorder Screening, Awareness, and Further Education (SAFE) Act of 2011 - Requires the Secretary of Health and Human Services (HHS) to take specified action, directly or through a grant program, with respect to blood disorders in adolescents, including: (1) developing a new, or identifying an existing, screening questionnaire that is evidence-based and in accordance with clinical guidelines for use in the diagnosis of bleeding disorders in adolescents and young adults; (2) disseminating and implementing the screening questionnaire and other screening tools relevant to the diagnosis of bleeding disorders in adolescents; (3) ensuring referral for further laboratory-based diagnostic testing if screening suggests the possibility of a bleeding disorder; and (4) ensuring referral for medical management if laboratory testing confirms diagnosis of a bleeding disorder.
Requires the Secretary to conduct an education campaign to increase awareness about bleeding disorders among health professionals.
Requires the the Director of the Centers for Disease Control and Prevention (CDC) to award grants or contracts to public or nonprofit private entities to: (1) augment existing research efforts to evaluate, improve, and standardize methods for diagnosing bleeding disorders; and (2) expand ongoing efforts to determine the prevalence of bleeding disorders, identify symptoms, risk factors, and co-morbidities associated with bleeding disorders, and implement female-specific surveillance systems and conduct related research to improve bleeding symptoms and quality of life among adolescent and adult women with bleeding disorders.
[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1919 Introduced in House (IH)]
112th CONGRESS
1st Session
H. R. 1919
To authorize the Secretary of Health and Human Services to conduct
programs to screen adolescents, and educate health professionals, with
respect to bleeding disorders.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
May 13, 2011
Mrs. McCarthy of New York (for herself, Ms. Richardson, Ms. Norton, Ms.
Bordallo, and Mr. Grijalva) introduced the following bill; which was
referred to the Committee on Energy and Commerce
_______________________________________________________________________
A BILL
To authorize the Secretary of Health and Human Services to conduct
programs to screen adolescents, and educate health professionals, with
respect to bleeding disorders.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Bleeding Disorder Screening,
Awareness, and Further Education (SAFE) Act of 2011''.
SEC. 2. FINDINGS.
The Congress finds as follows:
(1) Millions of men and women in the United States may have
an inherited bleeding disorder and not know it.
(2) The most common bleeding disorder, Von Willebrand
Disease (VWD), affects up to one in fifty Americans, occurring
equally amongst men and women.
(3) Most of those affected by Von Willebrand Disease remain
undiagnosed.
(4) The current combination of laboratory tests, clinical
observations, and family history to diagnose blood disorders
like Von Willebrand Disease is antiquated and unreliable.
(5) During adolescence, men and women may become aware of
some of the symptoms of bleeding disorders.
(6) Many Americans with bleeding disorders learn to live
with the chronic health risks which their bleeding causes, and
do not realize that they may have a bleeding disorder.
(7) It is believed that many of the 30,000 women who have
hysterectomies performed each year to treat severe bleeding may
actually have a bleeding disorder, and that these women could
avoid those unnecessary hysterectomies if properly diagnosed.
(8) Improved diagnosis of bleeding disorders, through
expanded screening of adolescents, improved physician
awareness, and additional research, could improve the quality
of life for millions of Americans.
SEC. 3. ADOLESCENT SCREENING PROGRAMS.
(a) In General.--The Secretary of Health and Human Services (in
this Act referred to as the ``Secretary''), directly or through the
award of grants or contracts to States, political subdivisions of
States or Indian tribes, or other public or nonprofit private entities,
shall carry out the following activities:
(1) Development of a new, or identification of an existing,
screening questionnaire that is evidence-based and in
accordance with clinical guidelines for use in the diagnosis of
bleeding disorders in adolescents and young adults.
(2) As widely as possible in adolescent populations--
(A) dissemination and implementation of the
screening questionnaire developed or identified under
paragraph (1) and other screening tools relevant to the
diagnosis of bleeding disorders in adolescents;
(B) if screening suggests the possibility of a
bleeding disorder, ensuring the referral for further
laboratory-based diagnostic testing; and
(C) if laboratory testing confirms diagnosis of a
bleeding disorder, ensuring the referral for medical
management.
(b) Priority.--In awarding any grant or contract under subsection
(a), the Secretary shall give priority to applicants proposing to
provide screening to high school or institution of higher education
students.
(c) Technical Assistance.--The Secretary, directly or through
grants or contracts, may provide recipients of grants or contracts
under subsection (a) with technical assistance regarding the planning,
development, and implementation of activities under such subsection.
(d) Authorization of Appropriations.--To carry out this section,
there are authorized to be appropriated such sums as may be necessary
for fiscal years 2012 through 2016.
SEC. 4. INCREASING AWARENESS AMONG HEALTH PROFESSIONALS.
(a) In General.--The Secretary, directly or through the award of
grants or contracts to States, political subdivisions of States or
Indian tribes, or other public or nonprofit private entities, shall
conduct an education campaign to increase awareness about bleeding
disorders among health professionals.
(b) Priority.--In awarding any grant or contract under section (a),
the Secretary shall give priority to applicants proposing to increase
awareness about bleeding disorders among--
(1) health professionals who commonly provide medical care
for the adolescent population, such as primary care physicians,
school nurses, physical fitness education teachers in secondary
schools, and health professionals providing services to
students through an institution of higher education's health
center; or
(2) obstetricians and gynecologists.
(c) Technical Assistance.--The Secretary, directly or through the
award of grants or contracts, may provide recipients of grants or
contracts under subsection (a) with technical assistance regarding the
planning, development, and implementation of activities under such
subsection.
(d) Authorization of Appropriations.--To carry out this section,
there are authorized to be appropriated such sums as may be necessary
for fiscal years 2012 through 2016.
SEC. 5. RESEARCH AND SURVEILLANCE.
(a) In General.--The Secretary, acting through the Director of the
Centers for Disease Control and Prevention, shall award grants or
contracts to public or nonprofit private entities to--
(1) augment existing research efforts to evaluate, improve,
and standardize methods for diagnosing bleeding disorders; and
(2) expand ongoing efforts to--
(A) determine the prevalence of bleeding disorders
in the general population, including prevalence of
bleeding disorders among adolescent women;
(B) identify symptoms, risk factors, and co-
morbidities associated with bleeding disorders; and
(C) implement female-specific surveillance systems
and conduct related research projects to improve
bleeding symptoms and quality of life among adolescent
and adult women with bleeding disorders.
(b) Technical Assistance.--The Secretary, directly or through the
award of grants or contracts, may provide recipients of grants or
contracts under subsection (a) with technical assistance regarding the
planning, development, and implementation of activities under such
subsection.
(c) Authorization of Appropriations.--To carry out this section
there are authorized to be appropriated such sums as may be necessary
for fiscal years 2012 through 2016.
SEC. 6. REPORT.
(a) In General.--Not later than 5 years after the date of the
enactment of this Act, the Secretary shall submit to the Congress a
report on the results of activities under this Act.
(b) Contents.--At a minimum, the report under subsection (a)
shall--
(1) catalog, with respect to bleeding disorder screening,
health professional education, and surveillance--
(A) the activities of the Federal Government,
including an assessment of the progress achieved under
this Act;
(B) the portion of students in United States high
schools and institutions of higher education who have
received some form of screening for bleeding disorders
as a result of programs under this Act;
(C) the number of health professionals who have
received some form of bleeding disorder education as a
result of programs under this Act; and
(D) the prevalence and incidence of bleeding
disorders among the general population and among women;
and
(2) make recommendations for the future direction of
bleeding disorder activities, including--
(A) a description of how the Federal Government, as
well as recipients of grants and contracts under this
Act, may improve their screening and education programs
to increase bleeding disorder diagnostic rates,
including the identification of steps that may be taken
to reduce--
(i) the prevalence of undiagnosed bleeding
disorders; and
(ii) the burden of bleeding disorders as a
chronic condition;
(B) an identification of organizations that have
most effectively and efficiently increased bleeding
disorder screening rates;
(C) an identification of programs and procedures
that have most effectively and efficiently increased
bleeding disorder screening rates, and steps that may
be taken to expand such programs and policies to
benefit larger populations;
(D) a description of the services provided by
hemophilia treatment centers, including information
regarding any increase in utilization of such centers
and any subsequent increase in resources necessary to
ensure sufficient treatment for all those utilizing
such centers; and
(E) recommendations for future research and
interventions.
SEC. 7. DEFINITION.
In this Act, the term ``State'' includes the District of Columbia
and any commonwealth, territory, or possession of the United States.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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